Happy 18 Month Birthday, Mason

When I look back at where we were 18 months ago, I am amazed at how far we've come. We've had ups and downs as you all are aware, and the last 6 months have been no exception. On the really positive note, we have set a record and have only been in the hospital once since Mason's first birthday. On the troubling note, we've been dealing with some of the same issues the last couple of months as August and September last year. Here's the last 6 months in a nutshell:

Lungs/Heart:
Mason has made some good progress with his lungs over the last 6 months. On average, he needs between 2 and 3 L of oxygen during the day and between 1 and 2 L of oxygen at night. He has had a few episodes of increased need including one from a cold in early May, once over the summer when he had a mild cold, once in August after getting aspiration pneumonia, and over the last couple of days now that he has another aspiration pneumonia.

We have continued to be able to wean down the steroids since March and he's now taking what is considered a "non-therapeutic" dose. This means that in all likelihood, the amount of steroid he is getting doesn't do anything for his lungs, but does help to keep his hormone levels (specifically cortisol) balanced. At the end of October, assuming everything goes ok between now and then, Mason will switch from prednisone to hydrocortisone and begin a 6 month very controlled process of weaning off of steroids all together. It is going to be a rough road, but in the end will be very, very good for him.

As far as the heart goes, thankfully, his heart is doing just the same as it has since last year. His heart continues to have to work extra hard to compensate for his lung disease, but fortunately, that extra work hasn't increased. We will continue to monitor Mason's heart about every 6 months, hoping for no change, until his lungs are fully developed.

Eating/Weight:
We've tried a couple of times to start feeding Mason by mouth, but each time, something doesn't go right and we decide it's not the right time. Mason continues to have difficulty coordinating the swallowing/breathing thing and continues to have significant reflux, so eating by mouth is still not a possibility. It will come in time, but not in the near future. We no longer see signs of "dumping syndrome" which is a huge blessing.

We have finally gotten Mason's caloric intake pretty well under control. Mason is no longer obese, which has been much better on his breathing. He is still short for his age, but his weight is no longer increasing exponentially. The official stats from his 18 month doctor visit today: 21 lb. 6 oz and 28 inches long.

Our biggest challenge over the last couple of months has been Mason's reflux (we think). Mason started spitting up again about 6-7 weeks ago and 5 weeks ago was diagnosed with aspiration pneumonia. With his lack of coordination in swallowing, some food had slipped into his lungs and camped out. With a short burst of steroids and some antibiotics, he improved back to his baseline and we were able to resume weaning his steroids. Unfortunately, sometime in the last week, it happened again. An x-ray taken today confirmed that he has aspirated again, and once again, developed pneumonia. Fortunately, this time, we caught it earlier and are hopeful that a course of antibiotics is all that is needed. We'll have to see what the next week or so brings. Hopefully increasing steroids won't be necessary. In order to figure out why this is happening again, we've got a referral for an upper GI study (dye put into the feeding tube to determine if the surgery from last December is still effective) and an appointment with the GI doctor next week. I'll keep you posted on what we find out.

Development:
Despite the recent developments with Mason's reflux, he has continued to make progress with his motor development. He is now standing almost all of the time, cruising around on furniture, and even walking while holding 1 or 2 of our hands. He is doing some form of crawling for very short distances (mostly in a tri-pod format - 1 hand down and on both knees, or in a commando crawl on his belly), but prefers to be standing. He continues to work with a PT from the school district every other week and periodic check ins with the PT at the medical office.

Mason is having some challenges with communication as well. We are happy to say that we know he understands most of what we say to him, but he has a hard time letting us know what he wants/needs. He is able to say 3 words (mama, dog, and ina) as well as wave hi and bye most of the time, but otherwise doesn't communicate. We are working with a teacher from the school district to help stimulate his mouth to want to form words/babble and teach him how to use signs to communicate. It's amazing how much learning to communicate comes with eating or playing with food. We will just have to learn some other ways to help Mason (and us) learn to communicate. We know he has the capacity, just needs the right stimulus and methods. Since he doesn't have enough breath to talk, we just need to help him learn non-verbal communication for a while.

Overall, the last 6 months have been a joy. We've been able to travel, enjoy the summer, and get out of the house without fear of cold/flu. We've seen Mason go from being a "baby" who couldn't move around to a little boy who loves being mobile and being independent. Mason continues to teach us about patience and unconditional love every day. He is the light of our lives!

We hope this finds everyone doing well. Thank you for all of your support and prayers!
Love, Christi, Bill, and Mason